Well versed in using social media to crowd-source opinions on restaurants and stores, this doctor wondered why there wasn't a digital platform to crowd-source health care providers' opinions on treatment options.

By Andrew Brandeis, N.D.

After numerous failures to treat chronic Lyme disease in numerous patients, I turned to my colleagues for insight. The standard of care recommends Doxycycline 100mg twice per day for 2 weeks, but it just wasn’t enough. Between patients, I texted with a colleague and learned that he was successfully using Doxy at double the dose, coupled with 500mg of Azithromycin and an herb called Samento. I hadn’t heard of that before and hadn’t seen any literature on it, but I trusted him and was willing to try this with a desperate patient. Within a week, my patient’s symptoms began to subside, and I’ve been using that combo for chronic Lyme disease ever since.

It was that doctor’s experience, not his knowledge, that got him better outcomes with Lyme disease. Experience, not knowledge, is the biggest limiting factor between good primary care providers and great ones. In my opinion, providers who refine their experience practicing over time have the highest success rates.

It’s impossible for doctors to know everything and yet primary care arguably may demand the greatest breadth of knowledge among all the medical specialties. Curious clinicians rely on reference tools like EPocrates to guide our decisions. But surely all doctors who’ve used EPocrates have felt what I’ve felt – a need for a digital reference that would allow us to search other doctors’ experiences rather than other knowledge available in printed literature. Though tools like Yelp help us gain social proof of the value of goods and services we consume in our personal lives, I wished there were similar platforms for health care providers to exchange opinions on the value of decisions they make at work.

Doctors have access to the same tools, but where do we turn when we want social proof that a treatment choice is the right one? I call, text or email my network of mentors. I post on Facebook and in Yahoo groups. But ask 15 primary care doctors the same question and you'll get 15 different answers. Worse still, the experience that’s captured in these forums is unstructured, not usable at the point of care, and ultimately lost. It’s impossible to do a quick search in a forum to find out how to treat the patient who is in front of you. So good doctors wind up making bad decisions because we have no way to share our experience.

Medicine's roots are in anecdotes. For thousands of years we've been using clinical observation to drive clinical outcomes. We need a way to combine the methods of the past with the technology of the present to advance the future standard of care.

I practice in a tech-savvy clinic in San Francisco. Thirty percent of my patients write code for Silicon Valley. Whenever I voice my frustration about the lack of tools I need for my practice, it’s always met by a look of why don’t you just build it yourself? on their faces. That’s why along with colleagues at my clinic and the help of some brilliant patients, I decided to create a free smartphone app for doctors to share their experiences with particular clinical decisions they had made. It was amazing to see how motivated my patients were to give their doctor access to better information.

On SharePractice doctors search for any diagnosis, then rank and comment on all the available treatments. Don't like Cipro for a UTI? Vote it down. Prefer cranberry and probiotics? Add it to the list (along with dose, frequency and duration) and tell your colleagues why.

I love to see popular treatments changing over time. For example, the highest rated treatment for anxiety is currently Valerian (15-45 gtts PO bid-qid prn). This trumps alprazolam and lorazepam. For UTI, the conventional treatment Cipro has been surpassed by Nitrofurantion (100mg PO bid for 5 days).

The way to capture our clinical experience in a reference tool is to participate and build our own. Have an opinion? Share your best practices in SharePractice and create your own standard of care.

Andrew Brandeis, N.D., is a naturopathic doctor, health care technology consultant, and co-founder of the integrative medical reference SharePractice. Dr. Brandeis earned his doctoral degree from Bastyr University in 2008. He currently practices at San Francisco’s Care Practice. SharePractice is a free app for health care providers and does not generate revenue for its founders.

Ironically I was bit by a tick before reading this article... I am interested in what other doctors have to say about treatment protocols. I disagree with Michael Barnett as much of medicine is unstudied or is heavily reliant on pharmaceutical sponsored research with numbers generated from possibly skewed data. And yes, I agree that cognitive bias is real, but I think "crowd sourcing" more doctors is a way to get around that. I am biased as I work with Share Practice. Medicine should be practiced with both patient centered data as well as clinician centered data. We are always seeking consult of our fellow doctors, Share Practice is a way of consulting rapidly with hundreds of doctors.

As the practice of medicine is dynamic in both art and science, the same is true for Share Practice which has the potential to pioneer trends in disease management that even the most unbiased pharmaceutical studies may lag behind for years. Medications such as azithromycin may potentiate dangerous QT prolongation in already at risk cardiac patients. The numbers are small and this data has and will continue to take years to become crystal clear. When the much larger population with low cardiac risk profiles was reviewed, the data suggests azithromycin is perfectly safe. With that information along with the possibly hundreds or even thousands of experienced clinicians reporting azithromycin (and doxy) to be effective against chronic lyme, an open conversation can be had with a chronically ill patient using data from both studies and experience to settle on a well informed plan of care.

In response to the other examples presented by Barnett, it is true that anecdotes occasionally fall into a category of less than successful. Share Practice actually supports this phenomenon. All treatments posted in SP are not inherently effective or even safe. There's a rating system through which experienced clinicians may rank treatments. If, for example, a medication such as Cipro is falling out of favor due to it's increasing resistance against gram negative UTI, Share Practice will reflect this change long before pharmaceutical studies by voting it down based on clinical experience. Similarly, if PCI for stable angina is presented in SP, it too will be voted down by the experienced clinicians who rate it poorly and may even comment as to why.

Calling it cognitive bias is inaccurate. When 10,000 doctors report a particular treatment has worked for them, or even 100 doctors say a treatment is totally unsafe or does not work, it's difficult to argue with experience like that. Share Practice votes are not based on how a doctor feels about a treatment or how it sounds coming from other doctors, it's about sharing experience. In essence sharing one's practice.

I find this view potentially dangerous for patient care and all primary care clinicians reading this should take notice.

Dr. Brandeis writes that he is now using a completely unstudied, broad spectrum regimen of doxycyline 200mg BID + azithromycin 500mg and Samento for treating "chronic lyme disease", itself an unproven clinical entity, and proudly declares that "Medicine's roots are in anecdotes", therefore we should learn from our colleague's experiences - and then promotes his own website to do this (which, regardless of whether or not it directly generates revenue for him, he licenses the technology behind it and profits from any growth in its user base). Do you have any commentary on the cardiac effects of this regimen given the observed increase in cardiovascular mortality with azithromycin, or possible increased risk for C. difficile or antibiotic resistance?

Even taking his point about anecdote as the mother of clinical innovation, what was the outcome when we listened to our colleagues' experience with hormone replacement therapy, or stem cell transplants for breast cancer, or PCI for stable angina, or renal artery stenting, or early MRI for back pain, or yearly PSA for all men over 50? All of these were at one time standard of care that have been shown in multiple trials to only expose patients to increased risk at best.

I think that this perspective is glibly attractive as a "crowdsourcing doctors" innovation but ultimately this is just a rediscovery of a very dangerous cognitive bias clinicians fall into that our clinical experience is always right, until we actually study it and find out we're wrong.

Our patients are not asking us to experiment on them with something we heard from our colleagues, they deserve high-quality, evidence based medicine and skepticism when we go outside those bounds. And when there is no evidence, we should rely on patient-centered data, not clinician-centered data.